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J O H N J A M E S writes on AIDS
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Copyright 1992 by John James;
permission granted for non-commercial use.
AIDS TREATMENT NEWS Issue #155, July 17, 1992
phone 800/TREAT-1-2, OR 415/255-0588
CONTENTS: [items are separated by "*****" for display]
Note: This special issue includes the first AIDS TREATMENT
NEWS INTERNATIONAL EDITION
***** Intrernational Edition Contents:
Bitter Melon: Traditional Treatment Tried for AIDS
Combination Antivirals: ddC Plus AZT Approved
Three-Drug Combination Trial: ddC Plus AZT Plus Interferon
Hypericin: Antiviral from St. John's Wort
Gamma Globulin: Inexpensive Treatment May Help Prevent
Infections
New Medical Journal Available by Computer
International Treatment Communication: About This Issue
***** Issue # 155 Contents:
About This Issue
International Conference: Advance Overview
AIDS Action Council Hires Derek Hodel As Treatment Advocate;
Expands Political Assistance
San Francisco: Combination Trial of Compound Q Plus AZT
Books:
The Medical Management of AIDS, Third Edition
Against the Odds: The Story of AIDS Drug Development,
Politics, and Profits
***** Bitter Melon: Traditional Treatment Tried for AIDS
As many as 100 persons with AIDS or HIV in Los Angeles,
California, may be using bitter melon (Momordica charantia) -
- a traditional herbal treatment, and also a food, in
Philippine, Chinese, and certain other cultures -- in the
hope that it might be helpful as an AIDS treatment. No
scientific trials have yet been run; and use of bitter melon
as a possible AIDS treatment seems to be mostly limited to
the Los Angeles area at this time. If bitter melon is found
to be helpful, it would be important throughout the world,
because this treatment costs very little, so people
everywhere could afford it.
Interest in bitter melon for HIV began in two different ways:
First, academic researchers found two proteins in bitter
melon which inhibit HIV in laboratory tests: MAP 30, and
momorcharin. But no one knows for sure what active ingredient
or ingredients (if any) might have clinical usefulness.
Second, the public interest in bitter melon developed because
of the work of one patient, who tried the treatment after
learning that it was being tested in the Philippines for
treating leukemia. He has used it for three years and reports
very good results. He happens to live in Los Angeles, and has
spoken at many AIDS meetings there. That is why the AIDS/HIV
use of bitter melon is currently centered in that city.
So far there seems to have been little risk from this
treatment; however, pregnant women must be warned that bitter
melon extracts can induce abortion. Not everybody finds that
this treatment works; some have reported that it did not seem
to help. And if it does work, it may take four to six months
for clear benefit to be seen.
Bitter melon is traditionally prepared for medicinal use as a
tea for drinking. But most of the people trying it for AIDS
are using it by retention enema, because of concern that some
ingredients might be destroyed in the stomach.
A report about bitter melon, including instructions for
obtaining and using it, is being prepared by an AIDS support
organization. To obtain a copy, send a self-addressed
envelope to: AIDS Intervention Team of APLG, 300 West Sunset
Blvd., Los Angeles, California 90012. (Note: Persons outside
North America should include two international postal reply
coupons, if possible, with their request for this report.)
***** Combination Antivirals: ddC Plus AZT Approved
The U. S. Food and Drug Administration has approved the drug
ddC for treating people with advanced HIV infection,
including AIDS -- but only for use in combination with AZT.
This approval, effective June 19, 1992, was based on two
small, preliminary studies which showed much greater
improvement in T-helper counts with the combination treatment
than would be expected with AZT alone. (But a large study
comparing ddC alone with AZT alone was stopped early, because
the AZT worked much better; those treated with AZT had a
lower chance of dying of AIDS than those treated only with
ddC. That is why ddC was approved for use in combination with
AZT, but not for use by itself.)
"ddC" is an abbreviation for the chemical name 2,3'-
dideoxycytidine; it is also called zalcitabine (generic drug
name) or HIVID (brand name). The drug, developed as an AIDS
treatment by Hoffmann-La Roche, was first approved in
Austria, on April 7, 1992; Roche has also applied for
approval in over 20 countries in Europe.
ddC is inexpensive to manufacture, probably pennies a day.
The reason is that very low doses are used; one kilogram is
enough to treat 1,000 people for more than a year. But
unfortunately, ddC may not be practical as a low-cost
treatment which could be available anywhere in the world,
since AZT is also required. AZT costs more to manufacture,
and it also costs more to use, since blood tests are required
to use it safely.
The main side effect of ddC is peripheral neuropathy, which
causes numbness, tingling, burning, or pain in the hands or
feet. If moderate discomfort occurs, it is important to stop
the drug immediately. Sometimes half-dose treatment can
resume later.
For more information about using ddC, see the "package
insert" for the drug, which is written for physicians. A
package insert is available in the United States, or in other
countries where the drug has been approved.
***** 3-Drug Combination Trial: ddC+AZT+Interferon
Burroughs-Wellcome Corporation, which markets AZT, has found
that a three-drug combination (AZT plus ddC plus alpha
interferon) worked very well against HIV in laboratory tests
-- much better than the two-drug combination of ddC and AZT
(which was recently approved by the FDA in the United
States). The company has recently started a large clinical
trial in the United States to see if this combination also
works well in people. The trial, which started treating its
first volunteers in late June, is comparing standard doses of
AZT and ddC against the same doses of those drugs plus a dose
of 3 MU of interferon injected once per day.
The form of interferon being used in this trial is Wellferon,
a "natural" alpha interferon which contains at least 16
variants of the interferon molecule. Wellferon is approved in
some European countries, where it is used for treating
hepatitis B. Other brands of alpha interferon might be
equivalent, but no one knows for sure.
For more information about the three-drug combination, see
"Three-Drug Study Begins: AZT Plus ddC Plus Alpha Interferon,
Eight U. S. Cities," AIDS TREATMENT NEWS Issue #154, July 3,
1992.
Note: The controversial AIDS treatment Kemron is a form of
alpha interferon similar to Wellferon. But Kemron treatment
is very different from standard interferon treatment, such as
that used in the Burroughs-Wellcome trial, for two reasons.
First, Kemron contains doses of interferon which are
thousands of times lower than those generally used. Second,
Kemron is placed under the tongue, instead of being given by
injection like conventional interferon treatment.
***** Hypericin: Antiviral from St. John's Wort
St. John's wort, a common plant which grows throughout the
world, contains a chemical called hypericin, which may have
broad-spectrum antiviral activity -- against HIV,
cytomegalovirus, human papillomavirus, influenza, hepatitis
B, and perhaps other viruses. St. John's wort has long been
used in herbal medicine; however, the plant contains very
little hypericin, and attempts to use crude extracts of it as
an HIV treatment have had little success. It is relatively
easy to chemically extract pure hypericin from the herb; but,
because of commercial motivations and government regulations,
this has seldom been done. There are reports that some people
have had unusually good results with concentrated chemical
extracts obtained through the AIDS treatment underground, but
we have been unable to confirm these reports.
Instead, the commercial effort to develop hypericin has used
a chemically synthesized version of the drug, not a plant
extract; several years have been lost in testing this
potential treatment, because of the time required to develop
an efficient synthesis procedure, and for other reasons.
Clinical trials are now being done at New York University, in
New York City. In order to get good scientific data, these
trials have given hypericin by intravenous injection -- even
though everyone expects that this drug will be used orally.
Recently the dose had to be reduced, because a side effect
was found; some people receiving the injections reported
discomfort in their hands and face, probably due to
phototoxicity (abnormal sensitivity to sunlight or other
strong light), which has been seen in animal tests of
hypericin. The trial is now proceeding with the reduced dose.
As of early July, no data is yet available about the possible
effectiveness of the drug as an HIV treatment. (Note: oral
use may cause less toxicity than intravenous use. Also, there
are reasons to believe that the purified plant extract may
work better than the synthetic now being tested.)
What is most needed now is for research groups to extract
concentrated hypericin from St. John's wort, and try it
orally as a treatment for AIDS or for the other viral
diseases listed above, outside of the constraints which
inhibit such research in the United States. A chemist,
perhaps at a university, working together with a physician,
could be the core of such a group.
For More Information
At least 30 articles have been published in scientific and
medical journals about hypericin's anti-HIV activity, and its
success in treating retroviral diseases in animals. (The
first of these articles appeared in Proceedings of the
National Academy of Sciences, USA, July 1988.) We do not have
space for a full bibliography here. AIDS TREATMENT NEWS
published reports on hypericin, including recent
bibliographies, in issue #125, April 19, 1991, and issue
#146, March 6, 1992; we will send these reports on request.
***** Gamma Globulin: Inexpensive Treatment May Help
Prevent Infections
Intramuscular gamma globulin, often used by travelers to
prevent hepatitis and other infections, might help to protect
against AIDS-related opportunistic infections. However, it
cannot protect against HIV itself.
This potential treatment was brought to our attention by
Joseph A. Hertell, M. D., an internist who treats AIDS
patients near Atlanta, Georgia. Dr. Hertell was involved in
developing this medication in the early 1950s, when he was
medical director of the American National Red Cross. Dr.
Hertell is now using the Gammar brand, which costs about $30
for a multiple-use vial; he gives 2 cc of gamma globulin per
week. He believes that his patients are getting fewer
infections than they would otherwise, and that some are able
to resume work and other activities as a result.
For more information on this use of gamma globulin, see
"Gamma Globulin to Prevent Infections?" AIDS TREATMENT NEWS
#152, June 5, 1992.
***** New Medical Journal Available by Computer
Starting July 1, 1992, The Online Journal of CURRENT CLINICAL
TRIALS has been published by computer. This fully peer-
reviewed journal is published by the American Association for
the Advancement of Science, in Washington, D. C. -- the same
organization which publishes the journal Science.
This computer journal avoids all printing and mailing delays
(as well as the wait for space in an issue) to get important
medical information as rapidly as possible to doctors,
scientists, and others. The articles are provided in typeset
quality, complete with charts and other graphics, if your
local computer equipment provides that kind of display. If
not, you can read the text of the articles by computer, and
then order typeset copies delivered by fax or mail if you
want.
One advantage of this computerized journal, especially if you
do not have easy access to a large medical library, is that
when articles in CURRENT CLINICAL TRIALS reference articles
in other journals, the abstracts from those other journals
are usually included in the computer, too, so you can see
them immediately.
For international use, CURRENT CLINICAL TRIALS is available
through the Internet -- but for text-only access at this
time. To receive typeset-quality graphics, you currently need
a computer running Windows 3.0 software, with a 9600-bps
modem. Text-only access is available from any computer
running software which emulates a VT100 terminal, with at
least a 2400-bps modem. The full graphics interface is now
being developed for Internet, and for Apple Macintosh
computers.
A subscription costs about $100 per year plus
telecommunication charges. For information about subscribing,
call CURRENT CLINICAL TRIALS, 202/326-6446, or send a fax to
202/842-2868.
***** International Treatment Communication: About This Issue
AIDS TREATMENT NEWS has published more than 150 issues in San
Francisco -- twice each month for over five years. It is well
known in the United States (see "Underground Press Leads Way
on AIDS Advice," by Katherine Bishop, The New York Times,
December 16, 1991), and has subscribers in many countries.
Recently we also decided to publish the AIDS TREATMENT NEWS
International Edition, designed for free distribution to AIDS
organizations everywhere, and through them to their clients.
This first issue of the International Edition is being
distributed at the VIII International Conference on AIDS/III
STD World Congress, July 19-24, 1992, in Amsterdam.
International Medical Communication
We have found that the biggest obstacle to international
sharing of AIDS treatment information is not the language
barrier. Instead, it is the great variety of medical
traditions, the differences in economic circumstances, and
the differences in AIDS itself, in different parts of the
world.
In order to be understood by persons in many cultures and
medical traditions, we chose a journalistic style modeled in
part on the television network CNN. Each treatment article
will be short. It will tell what people are doing, why they
are doing it (whether their rationale or authority is
scientific, traditional, empirical, or other), and how you,
the reader, can get more information about that treatment if
you want to. In this way the International Edition will try
to report complex medical issues in a context that can be
understood by both professionals and lay persons.
Because this newsletter is short and published only four
times a year, translation, printing, and shipping will cost
relatively little. We hope to raise money to provide free
copies to AIDS organizations that want them, anywhere in the
world. All costs, including shipping, should be funded, so
that lack of money or of foreign exchange will not be an
obstacle for anyone.
This newsletter must speak to two audiences -- those who seek
treatments regardless of cost, and those with little or no
money who want to learn about treatments which they can
obtain. The expensive treatments are not always better;
sometimes big money creates its own dynamics far removed from
practical experience. But usually the expensive treatments
are studied scientifically, and the low-cost ones are not.
AIDS TREATMENT NEWS International Edition will report about
both. When data from scientific trials is not available, we
will do the best we can through investigative journalism --
while strongly supporting the scientific study of
noncommercial treatments by agencies such as the World Health
Organization. But before there is data, we should remember
that until very recently, there were no scientific trials for
any treatment; all drug development in history was based on
clinical experience. With today's modern communication and
information processing, plus laboratory science at academic
institutions throughout the world, treatment development
through practical clinical experience can be more powerful
and more useful than it ever has been before.
Treatment Information Politics
When AIDS TREATMENT NEWS began in 1986, there was little
interest in AIDS treatments, because almost everyone believed
that everybody with AIDS would die. There was never
scientific evidence to support this social myth of universal
death; in fact, there has long been evidence to the contrary.
But people were already "written off" as lost, so there was
little organized effort to save their lives. Instead, AIDS
organizations tried only to prevent the spread of the
infection, or to provide comfort and services for the dying.
What changed this fatalism was the development of a vigorous
AIDS treatment activist movement, energized by people trying
to personally survive the epidemic, and to help others do so.
Today, non-government organizations like ACT UP and Project
Inform negotiate with scientists and officials, with
pharmaceutical companies and government agencies, to make
sure that research is properly funded, and that clinical
trials are designed so that they can be conducted effectively
in the real world. Nonprofit groups called buyers' clubs help
people obtain rational therapies at the lowest possible
prices -- whether or not those treatments are officially
approved. Newsletters, including AIDS TREATMENT NEWS,
describe promising experimental treatments and summarize what
is known, months or years before the information appears in
medical journals -- and critique government and corporate
policies which are often negligent and sometimes politically
malicious.
But in most of the world there is no treatment activist
movement, and no organized effort to save the lives of people
who already have AIDS or HIV. Government programs only try to
prevent new infections. In one sense this policy may be
understandable, since resources are limited and prevention
costs much less than treatment; the same money spent on
prevention can save many more lives than if spent on
treatment. But treatment activism is also needed, because it
can mobilize the energy of people who want to save themselves
and their friends, greatly benefiting the entire fight
against AIDS, prevention as well as treatment.
In much of the world, AIDS treatment is either nonexistent,
or limited to what people can find among local healers and
traditional medicines. Some of these traditional treatments
may have great value, and be important for the world. We need
more communication about treatments among the practitioners
of different medical traditions, and among organizations in
different countries. We need to develop ongoing working
relationships, so that the international treatment community
can know itself better, and can judge who is credible and who
is not.
We hope that the AIDS TREATMENT NEWS International Edition
will contribute to this development.
Funding
AIDS TREATMENT NEWS has been supported entirely by
subscriptions and unsolicited gifts; we do not seek or
receive government, foundation, or corporate grants. We paid
for this first issue of the International Edition with our
own funds. But future issues must be funded to allow
translation and printing in Spanish, French, and other
languages, and free distribution to agencies throughout the
world.
To preserve editorial independence, AIDS TREATMENT NEWS
prefers not to receive this funding directly. Instead, we
want to work with other organizations which can act as fiscal
sponsors, and manage the translation, printing, and
distribution of the newsletter. Funding could come from
corporations, foundations, government agencies, or
individuals.
Note:
(1) You may reproduce this International Edition, either by
photocopying, or by republishing these articles either in
English or in translation. We ask that our address and fax
number be included. No permission is necessary, but we
suggest that you contact us in case more recent information
is available. Also, we can mail master copies (originals from
a laser printer) so that your copies will have the best
possible print quality.
(2) When the International Edition refers to articles in the
original AIDS TREATMENT NEWS, we will fax or mail those
articles upon request, without charge.
(3) To contact us for any reason -- to be on our mailing list
for future copies of the International Edition, to tell us
about treatments we should cover, or to discuss the content
of this newsletter, write or fax to: AIDS TREATMENT NEWS
International Edition, Post Office Box 411256, San Francisco,
California 94141. Our fax number is 415/255-4659.
******************** ISSUE # 155 ********************
About This Issue
The four-page centerfold of this issue is the first AIDS
TREATMENT NEWS International Edition -- designed to provide
practical information about experimental and traditional
treatments to people from many different cultural backgrounds
and medical traditions. We are taking 3,000 copies to the
AIDS conference in Amsterdam next week. In the future, we
hope to publish the International Edition four times a year
in partnership with other organizations, in English, Spanish,
French, and other languages, and to find funding to provide
free copies to AIDS organizations that want them, anywhere in
the world.
Most treatments reported in the International Edition will
have already been covered in more detail in the regular AIDS
TREATMENT NEWS. An exception is the article on bitter melon,
enclosed; our longer article is not finished yet.
Please send any comments on the International Edition to John
S. James at AIDS TREATMENT NEWS.
***** International Conference: Advance Overview
by John S. James
The VIII International Conference on AIDS, the largest AIDS
conference of 1992, will take place in Amsterdam, July 19-24,
1992. The great amount of information presented at each
year's conference is overwhelming and sometimes confusing. An
advance overview can help in understanding news reports
during the meeting itself, and in understanding the summaries
which will appear later in AIDS TREATMENT NEWS and elsewhere.
We have not yet seen the abstracts to be published at the
conference, nor the authors and titles of poster sessions.
(We urge future conferences to make this information
available in advance, so that attenders can prepare ahead to
make better use of the six busy days of the meeting.) We do
have a press backgrounder on what the conference organizers
think is some of the most important information to be
presented. In addition, we have our list of treatments and
other topics to look for.
The press backgrounder from the conference lists 13 topics,
of which three are most directly important to the readers of
AIDS TREATMENT NEWS:
"Vaccine Development and Vaccine Therapy:
Currently fifteen HIV vaccines are in clinical trials. These
include both preventive and therapeutic vaccines. Studies of
particular interest in this area include the work of Robert
Redfield (Walter Reed Hospital, USA) and of Fred Valentine
(New York University Medical Center, USA). Both studies
concern the introduction of a vaccine based on rgp 160 into
volunteers with early HIV infection and high CD4 cell counts.
In the area of vaccine development, important new work will
be presented by Abdelizsiz Benjouad and others (Institute
Pasteur, France) and Tun-Hou Lee (Harvard School of Public
Health, USA). Both studies involve removal of sugar from the
HIV molecule, a process crucial to effective vaccine therapy.
Gene Therapy:
One of the most promising and exciting areas of HIV/AIDS
research is gene therapy, an approach in which attempts are
made to use other genes to interfere with the replication of
HIV-1 and its ability to cause AIDS. Progress will be
reported in efforts by Matsuda and Essex (Harvard School of
Public Health, USA) to reduce the infectivity of HIV through
introduction of virus-specific interfering molecules, and in
efforts by Caruso and Klatzman (Hopital de la Pitie-
Salpetriere, France) to develop selective killing of HIV-
infected cells by booby-trapping them with toxic molecules.
Early AZT and Combination Antiretroviral Therapy:
In recent months, there have been conflicting reports on the
risks and benefits of early treatment with AZT. A series of
presentations will help clarify study results on this issue.
The latest evidence will also be presented for the efficacy
of combining antiretrovirals rather than treating with only
one such drug. In addition, novel approaches for rationally
using combinations to prevent the emergence of resistant
viruses will be discussed."
The other ten topics highlighted in the press backgrounder
are: Animal models; Evidence of differing transmission
efficiency by genotype; The definition of AIDS; HIV
transmission in health care settings; Genetic variations and
the epidemiology of HIV; Human rights and HIV; Women and HIV;
HIV/AIDS in the developing world; Traditional and alternative
therapies; and Global meetings.
Other Questions
Four people from AIDS TREATMENT NEWS will be at this
conference in Amsterdam. The following list (which did not
come from the conference organizers) includes some of the
questions we are using to organize our own approach to
information gathering at the meeting:
ddI: Information from an Italian study may support ddI over
AZT as initial therapy.
AZT, ddI, ddC: For the approved antivirals, the most
important question is what medical consensus is developing on
when and how to use them.
Other nucleoside analogs: We have heard generally good (but
sketchy) reports on d4T and 3TC, which are now in clinical
trials. We have heard little about FLT and other fluorinated
nucleoside analogs.
PMEA: This drug, active against both HIV and a number of
other viruses, might be important, but has received little
public attention in the U. S. Development appears to have
languished for business reasons; we have heard that a
clinical trial may start in the fall.
Tat inhibitors, protease inhibitors: We will be looking for
any information on these. Protease inhibitors, the target of
major research by pharmaceutical companies, have performed
very well in laboratory tests, but apparently are proving
difficult to turn into useful drugs.
Hypericin, NAC: We do not know whether information will be
presented at the conference.
Bitter melon: We expect some information to be presented, and
want to see how it is received.
Compound Q: Data from at least one ongoing study will be
presented.
CD8 expansion: Trials are starting now, so it may be too
early to expect much information.
Hyperimmune milk, similar antibody treatments: For some years
there have been positive reports about this potential therapy
for cryptosporidiosis. Last week a related article (although
not mentioning AIDS) appeared in the "Patents" column of The
New York Times (July 11); it concerned hyperimmune milk and
eggs, from cows and chickens which have been specially
vaccinated. Apparently such "nutriceuticals" are already
being sold in Asia. We do not know if there will be any
information at the conference.
Other treatments we will look for include passive
immunization, BI-RG, human growth hormone, itraconazole and
other new antibiotics (and new uses of old antibiotics),
HPMPC, and anti-angiogenesis drugs for KS and cancer. We are
also interested in advances in diagnostic tests and markers
of disease progression, and in international treatment
organizations and communication.
Pathogenesis -- understanding the development of HIV disease
and AIDS -- will be a major focus of attention at the
conference. A potentially important paper was published in
June 1992 in the Journal of Infectious Diseases (M. Cerici
and others, "Cell-Mediated Immune Response to Human
Immunodeficiency Virus (HIV) Type 1 in Seronegative
Homosexual Men with Recent Sexual Exposure to HIV-1"); it
reported that a few HIV-negative men had clear immunological
evidence of having been exposed to HIV, but may have either
fought off the virus, or been infected and recovered. We want
to see what new information or consensus about this report
may develop at the conference.
***** AIDS Action Council Hires Derek Hodel As Treatment
Advocate; Expands Political Assistance
by John S. James
The AIDS Action Council, "the only national organization
dedicated solely to shaping federal AIDS policy," has hired
Derek Hodel, formerly executive director of New York's PWA
Health Group, the largest and most influential buyers' club
in the nation, as a full-time, Washington-based treatment
advocate, starting July 13. Hodel will "lobby, advocate, and
organize on issues associated with HIV-related research and
HIV-related drug development and access within all relevant
branches and agencies of the federal government, within the
private sector, and within the AIDS and health-advocacy
communities." His first assignment will be to represent the
AAC at the International Conference on AIDS in Amsterdam.
AAC Assistance for Community-Based Organizations
For the last year, the AAC has run the AIDS Action Network,
currently consisting of 720 CBOs from 144 states -- including
170 minority organizations. These member organizations
receive a short newsletter (usually five or six pages) every
two weeks, providing background on policy issues. Recent
newsletters have included healthcare reform, the Presidential
campaign work of United for AIDS Action (see AIDS TREATMENT
NEWS #153, June 19, 1992), and tuberculosis. Sometimes they
include "federal funding alerts" on deadlines to apply for
funds; these can be faxed if urgent.
Recently the AAC started a Community Organizing and Education
department, run by Belinda Rochelle (who is well known as a
treatment advocate, especially with the AIDS Clinical Trials
Group of the U. S. National Institute of Allergy and
Infectious Diseases). This project will help local
organizations to lobby effectively -- for example, by letting
them know what political work can legally be done by
publicly-funded service groups, who, like others, have a
right and responsibility to stay in touch with their
Congressional representatives. It will work with the whole
spectrum of AIDS organizations in a target city, when invited
by them, to help them solve federal, state, or local problems
-- concerning lobbying for state funding, for example, or
talking effectively with federal agencies. Initial cities to
receive this help are Cleveland, San Diego, and Richmond. The
new department is also assisting in visits to eight other
cities -- Houston, Austin, San Antonio, Cleveland, Portland
(Oregon), Chicago, Des Moines, and Little Rock -- to work
with local groups to organize visits to key members of the
appropriations committees in the Senate and House, to urge
maximum funding for all AIDS programs.
If your community-based organization wants to join the AIDS
Action Network, call Belinda Rochelle at AIDS Action Council,
202/986-1300, ext. 20.
AAC Background
The AIDS Action Council is a membership organization
supported by the over 500 community-based organizations which
are its members. (Do not confuse these organizations with the
720 member organizations of the AIDS Action Network; no fee
is required to belong to the latter.) It has been active on
many issues, for example: Congressional funding for
prevention, care, and research; fighting the federal freeze
on funds for housing for disabled persons with AIDS; fighting
political restrictions on effective campaigns against AIDS
transmission; bringing together physicians and other experts
to develop policies on the tuberculosis epidemic; and
restoring funds cut from programs targeting AIDS prevention
in minority communities. AAC also convenes the National
Organizations Responding to AIDS (NORA), "a 150-member
coalition of national health care, civil liberties, women's,
minority, and gay groups involved in the fight against AIDS. "
Comment
AIDS Action Council's work "to forge the bonds between
community-based service providers and national decision-
makers," is especially important because many members of
Congress have said that they are not hearing about AIDS from
their constituents. If more people would let their
representatives (and other officials) know that AIDS is
important to them, that we need effective prevention
programs, treatment research and development, access to care,
and compassionate treatment of persons with AIDS or HIV, then
the battles in Washington would no longer be an uphill fight.
The AIDS Action Council believes that grassroots pressure
will keep AIDS a priority in government, and in people's
minds. Educating those who care about AIDS on the mechanics
of being heard in local, state, and federal governments, and
on the background of the policy issues involved, will make
that pressure more effective.
Today the usual answer on AIDS, from members of Congress and
other federal officials, is that there is no money. AIDS
Action Council answered, "However bad the year, where there
is political will, increases can be found. We saw that with
Desert Storm." (We could add that Congress is willing to
spend billions of dollars for weapons systems the Pentagon
doesn't even want, just to make jobs in members' districts.
AIDS funding would create more jobs, while saving lives
instead of accumulating useless hardware.)
But not all the problems are financial. The research and
development of new treatments, on which so many people's
lives directly depend -- and which, when successful, will
make many other problems far more manageable -- has been
characterized by unbelievable wasting of opportunities even
when money is not the issue, due to lack of leadership and
lack of political will. Until recently there has been a
dangerous advocacy vacuum concerning federal issues of
science, management, and drug development; the Washington
organizations have had to focus elsewhere (on funding,
prevention, and services), while the treatment organizations
have not had the resources or the federal experience to give
these issues the attention they deserve. This is why we are
encouraged that two major organizations which know the
federal system -- the AIDS Action Council, and the Human
Rights Campaign Fund -- have started treatment-advocacy
projects.
San Francisco: Combination Trial of Compound Q Plus AZT
A trial at San Francisco General Hospital is now comparing
GLQ 223 (trichosanthin, also called compound Q) in
combination with AZT, vs. AZT alone or GLQ 223 alone.
Standard doses of AZT will be used; the compound Q will be
given every week for the first four weeks, and then every
three weeks, in escalating doses. The study will last 45
weeks.
To be eligible, volunteers must have AIDS or symptomatic HIV
infection (but not have an active AIDS-defining opportunistic
infection when they enter the study). They must have a T-
helper count between 200 and 500, have been on AZT for at
least nine months before the study, and never have used
compound Q. There are additional entry criteria, but these
are the ones most likely to rule out potential volunteers.
For more information, call Carol Arri, 415/476-9296 ext.
84094.
***** Books: Medical; History
** THE MEDICAL MANAGEMENT OF AIDS, THIRD EDITION. Edited by
Merle A. Sande, M. D., and Paul A. Volberding, M. D. W. B.
Saunders, Philadelphia, 1992.
This book, written by over 40 AIDS physicians and other
treatment experts from around the world, and edited by
leading physicians at San Francisco General Hospital, is the
most authoritative textbook on mainstream AIDS treatment. The
information is up to date; the third edition, published in
six months from when the chapters were ready (very rapid
turnaround for A medical textbook), is reaching bookstores
now.
The material is well organized, with 26 chapters covering
such areas as dermatologic care, oral complications,
gastrointestinal manifestations, neurological complications,
hematologic manifestations, and specific infections including
pneumocystis, cryptococcal infections, toxoplasmosis,
bacterial infections, syphilis, TB and MAI, and malignancies.
A "Special Aspects of AIDS" section includes chapters on
pediatric AIDS, therapeutic issues in women, AIDS litigation,
and supporting health care workers in treatment of HIV-
infected patients.
Not everyone with HIV will want to read so technical a book
about it. But The Medical Management of AIDS should be
readily available, perhaps in libraries of support
organizations. Patients may want to see how their specific
diagnosis fits into a larger picture, or how their treatments
look from the viewpoint of mainstream consensus.
** AGAINST THE ODDS: THE STORY OF AIDS DRUG DEVELOPMENT,
POLITICS, AND PROFITS. By Peter S. Arno, Ph.D., and Karyn L.
Feiden. HarperCollins Publishers, New York, 1992.
This is the second book to tell the history of AIDS treatment
research and development in a way nonspecialists can
understand. (The first was Good Intentions: How Big Business
and the Medical Establishment are Corrupting the Fight
Against AIDS, by Bruce Nussbaum, published in 1990.) Against
the Odds may have more influence; it is being reprinted as
the first printing quickly sold out. Like Good Intentions, it
is based on interviews with some of the key people involved,
as well as on documentary evidence.
Health economist Arno and health writer Feiden, who are both
well known in their fields, focus on the time between the
approval of AZT in March 1987, and of ddI in October 1991.
Their health expertise allows them to speak authoritatively
on many issues: for example, to place the modern history in
the context of the other horrors that happened before the
development of modern ethical standards for research (the
infamous "Tuskegee experiment" was the most notorious case,
but far frOm the only one); and to show that much of the
treatment access AIDS activists are still fighting for has
long been routine with cancer.
The most important part of the book is its catalog of
dramatic, disastrous mistakes, mostly by government agencies,
which delayed the development of AIDS-related drugs --
pentamidine and other pneumocystis prophylaxis, ganciclovir,
fluconazole, trimetrexate, and others. (Pharmaceutical
companies may have made fewer notable mistakes because most
of them chose not to help in AIDS at all.) Here also are the
partial successes, such as the rapid approval (but not the
pricing) of the first anti-AIDS drug, AZT.
The book is also a short history of "the activist and patient
communities who have informed themselves about this epidemic
more fully than any community ever has and have now altered
the course of government policy toward AIDS and other
diseases."
One of the most important points was quoted from Martin
Delaney of Project Inform: "There is no bureaucracy in this
nation whose goal is to advocate on behalf of the needs of
people with this disease. FDA's task is to keep unsafe or
ineffective drugs out; NIH's task is to conduct the research.
Whose task is to make sure that people get what they need?
Nobody's." We could add that AIDS activism has developed to
fill this gap as best it can.
The book ends inconclusively. "For now, the story of AIDS
drug development remains a struggle between those who have
all the time in the world and those for whom time is running
out. But it also remains a story of hope -- a hope that holds
steadfast against the odds."
Comment
Where are we now? Our own view is consistent with the picture
supported by Arno and Feiden.
We believe that the end of the drug-development pipeline --
FDA approval of urgently needed drugs -- has been repaired as
well as we can expect given political realities. The new
accelerated-approval procedure has delivered ddI and ddC. We
must be vigilant against forces seeking backsliding. But the
main problem now shifts from a constipated pipeline to an
empty one.
For repairs have only started on the beginning of the
pipeline (getting promising agents through preclinical
testing and into humans for the first time) and the middle
(larger human trials, by the often-disorganized AIDS Clinical
Trials Group, and the often-uncommitted pharmaceutical
industry).
This development is no happenstance. For activists have had
to step in where national leadership (both government and
private institutions) has failed. And some parts of the
leadership vacuum are more difficult than others for
grassroots activists to fill. For example, it is easy to
organize around FDA delays late in drug development, because
by then data exists, and the drugs are ready to go. But -- as
Arno and Feiden quoted from AIDS TREATMENT NEWS -- "It is
harder to organize people around deaths caused by drugs which
do not exist and perhaps never will, but should."
***** AIDS TREATMENT NEWS
Published twice monthly
Subscription and Editorial Office:
P. O. Box 411256
San Francisco, CA 94141
800/TREAT-1-2 toll-free U. S. and Canada
415/255-0588 regular office number
415/255-4659 fax
Editor and Publisher:
John S. James
Medical Reporters:
Jason Heyman
John S. James
Nancy Solomon
Reader Services, Business, and Marketing:
David Keith
Thom Fontaine
Jason Heyman
Nancy Solomon
Laura Thomas
Tadd Tobias
Rae Trewartha
Statement of Purpose:
AIDS TREATMENT NEWS reports on experimental and
standard treatments, especially those available now. We
interview physicians, scientists, other health
professionals, and persons with AIDS or HIV; we also
collect information from meetings and conferences,
medical journals, and computer databases. Long-term
survivors have usually tried many different treatments,
and found combinations which work for them. AIDS
Treatment News does not recommend particular
therapies, but seeks to increase the options available.
Subscription Information: Call 800/TREAT-1-2
Businesses, Institutions, Professionals: $230/year.
Nonprofit organizations: $115/year.
Individuals: $100/year, or $60 for six months.
Special discount for persons with financial difficulties:
$45/year, or $24 for six months. If you cannot afford
a subscription, please write or call.
Outside North, Central, or South America, add air mail
postage: $20/year, $10 for six months.
Back issues available.
Fax subscriptions, bulk rates, and multiple subscriptions
are available; contact our office for details.
Please send U. S. funds: personal check or bank draft,
international postal money order, or travelers checks.
VISA, Mastercard, and purchase orders also accepted.
ISSN # 1052-4207
Copyright 1992 by John S. James. Permission granted for
noncommercial reproduction, provided that our address
and phone number are included if more than short
quotations are used.
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